2021 - The CdLS Foundation turns 40.

The CdLS Foundation celebrates 40 years of serving the CdLS community.  

“Our daughter was born in 1991, and diagnosed near birth. As we left the hospital, we were given contact information for the Foundation, but in all honesty, it took us weeks to call, not particularly wanting to join this particular club, still hopeful the doctors were wrong. Soon after I called the Foundation, a mom of another child with CdLS called me, then another, (this was before the days of Facebook) and soon I was feeling more hopeful again. We attended our first Conference in Tempe in 1994 with our three other kids in tow, one a newborn, and sitting in the dining room were amazed to see so many other kids that looked like our Maddy! 

Conference was not only good for us, helping us see that others were facing and overcoming similar challenges, but also good for our children, as they played with other children in the pool during that amazingly hot week. We wanted to put on a fundraiser after our daughter passed away and the Foundation gave us the moral and logistical support to do this, Maddy’s Run and communicated with us during this terrible time.   

We have been to many conferences since 1991, we have been on the Board, I have done medical consultations and lectures, and now our oldest son is on the Board, a civil rights/disability lawyer, almost certainly influenced by his sister. The Foundation has been a great support for all of us, all along the journey.” – Lynne Kerr